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The Aberrant Behavior Checklist (ABC) was originally developed to evaluate interventions, and is a well-established assessment tool for challenging behaviours in people with intellectual disabilities and autistic people. However, whether the ABC displays longitudinal measurement invariance (i.e., whether it captures the same constructs over time) has been sparsely explored. The aim of the current study is to explore the factor structure, longitudinal measurement invariance, and clinical correlates of the ABC in autistic individuals with intellectual disabilities. Using data from a multicentre study of mental health assessment and treatment in autistic people with intellectual disabilities, the intake ABC scores of 200 autistic individuals with intellectual disabilities were used to explore the ABC factor structure, internal consistency, and clinical correlates (age, gender, level of intellectual disability, autism characteristics, communication skills). Scores across three time points (intake, post-intervention, follow-up) were used to explore longitudinal measurement invariance and internal consistency over time. The original five-factor structure showed a non-optimal but acceptable fit, which was similar or slightly improved compared to previous studies. Associations for some ABC subscales were found to be positive for autism characteristics and negative for communication skills. Four of the five subscales (irritability, social withdrawal, stereotypic behaviour, inappropriate speech) showed residual levels of longitudinal measurement invariance, while one subscale showed noninvariance (hyperactivity/noncompliance). The current study demonstrates the construct validity and applicability of the ABC in autistic individuals with intellectual disabilities, while also indicating that caution is advised for one of its subscales in comparisons across time., Competing Interests: Declarations. Conflict of Interest: Three of the authors have previously collaborated with Michael G. Aman, who co-developed the Aberrant Behavior Checklist. This has not affected the current study. The authors confirm that they have no other potential conflicting or competing interests., (© 2024. The Author(s).)

Background: During the COVID-19 pandemic we implemented a partially online music intervention to examine the feasibility, experiences and short-term outcomes on the challenging behaviour and well-being of adults with intellectual disabilities., Method: This mixed-methods study included 10 participants with mild or moderate intellectual disabilities who received 16 one-hour individual music sessions in 10 weeks, either face-to-face or online. Data on feasibility and experiences from participants and music workers were collected and analysed using inductive thematic analysis. Challenging behaviour and well-being were measured before and after intervention., Results: Overall experiences were positive and concerned appreciation, positive feelings, musical abilities, attention span, relatedness and personalisation. Online experiences varied, but most participants preferred face-to-face over online sessions. After the intervention, challenging behaviour scores were better than before., Conclusions: Engaging in a partially online music intervention is feasible for people with intellectual disabilities and seems to improve challenging behaviour. Experiences are discussed and recommendations for future online sessions are provided., (© 2024 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Objectives: Behaviours such as hitting-out and declining personal care are commonly exhibited by people living with dementia and are associated with care-giver stress and anxiety and care home placement breakdowns. Traditionally, pharmacological approaches have been used to manage behaviour; however, research indicates limited effectiveness. National guidelines recommend use of non-pharmacological interventions as first line treatment for distress, but further research is required to elucidate the components that lead to improved care for people living with dementia. This study aims to explore what works, examining case studies in which a non-pharmacological clinical intervention, the Newcastle Model, was used to understand and manage distressed behaviour in dementia care within care home settings. Method: A qualitative case study design was used. Three cases were selected from the Edinburgh Behaviour Support Service for their success in preventing care home placement breakdown during a distressed behaviour intervention in NHS Scotland. Family members and staff involved in the interventions within these cases were interviewed ( N = 6). Thematic analysis was used to analyse data. Findings: All participants reported positive outcomes from the intervention. Three key themes were identified, each with subthemes. Participants described a supportive, non-judgmental environment which allowed them to integrate knowledge about dementia and tailor interventions to the specific needs of the individual living with dementia. There was also a sense of family and staff coming together to unite with shared goals. A preliminary model of all of themes and their interactions is presented. Conclusion: The study supports use of biopsychosocial, formulation-led approaches in the understanding and treatment of complex behavioural presentations in community care settings. It suggests that clinicians should endeavour to facilitate safe and open environments for care home staff and family members, in order to promote attribution change and person-centered care, and to help mediate differences and conflict between staff and family members., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Uncommon behaviours such as aggression, apathy or restlessness are described as challenging behaviours in dementia care. On the one hand, this concept describes a practical problem faced by care staff and, at the same time, defines normatively how care staff should deal with this problem. A frequent benchmark here is the dignity of the person in need of care, which caregivers should also respect in the case of challenging behaviour. However, little is known about the normative standards that are effective in practice in everyday care when dealing with challenging behaviour. Researching these can provide information on which standards are actually applied and encourage reflection on which standards should be applied. In view of the fact that challenging behaviour can also be associated with aggression and/or violence in particular, an ethically significant question arises as to what effects the practical handling of such behaviour has on the extent of the willingness to use violence. The aim of this article is therefore to present empirical findings from an ethnographic study that focuses on the interpretation and practical handling of aggressive behaviour of care recipients by the nursing staff. In essence, it will be shown that a professional approach to challenging behaviour helps to prevent people with dementia in need of care from committing violent acts. If this finding is analysed in terms of its ethical implications, the conclusion suggests itself that the exclusion of the possibility of using violence is to be welcomed, since the exercise of violence makes respect for the dignity of another person, if not impossible, at least more difficult. However, it is questionable whether, under such conditions, the renunciation of violence can still be attributed the freedom required to qualify it as ethically good behaviour., Competing Interests: The authors declares that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2024 Barth.)

Background: Adults with intellectual disability experience increased rates of mental health disorders and adverse mental health outcomes., Aim: Explore childhood risk factors associated with adverse mental health outcomes during adulthood as defined by high cost of care, use of psychotropic medication without a severe mental illness and psychiatric hospital admissions., Method: Data on 137 adults with intellectual disability were collected through an intellectual disability community service in an inner London borough. Childhood modifiable and non-modifiable risk factors were extracted from records to map onto variables identified as potential risk factors. Logistic and linear regression models were employed to analyse their associations with adverse outcomes., Results: We showed that the co-occurrence of intellectual disability with autism spectrum disorder and/or attention-deficit hyperactivity disorder (ADHD) were associated with psychotropic medication use and high-cost care packages. However, when challenging behaviour during childhood was added, ADHD and autism spectrum disorder were no longer significant and challenging behaviour better explained medication prescribing and higher cost care. In addition, the severity of intellectual disability was associated with higher cost care packages. Ethnicity (Black and mixed) also predicted higher cost of care., Conclusions: Challenging behaviour during childhood emerged as a critical variable affecting outcomes in young adulthood and mediated the association between adult adverse mental health outcomes and co-occurring neurodevelopmental conditions, that is, ADHD and autism. These findings emphasise the need for effective early intervention strategies to address challenging behaviour during childhood. Such interventions for challenging behaviour will need to take into consideration autism and ADHD.

Background: Multidisciplinary care planning for people with intellectual disabilities who engage in behaviours of concern (BoC) is challenging and complex. Effective collaborative understanding and action planning across all stakeholders is essential. Cornwall's Adult Community Learning Disability Team developed a care planning tool ( Connect Behaviour ) using contemporary evidence and best practice. Connect Behaviour is designed to facilitate care planning by collaborative and enhanced shared understanding and is also available as an interactive web-based tool., Aim: To evaluate Connect behaviour using stakeholders' experiences., Methods: Family members, care providers, advocates, social workers and professionals who had attended meetings guided by the Connect Behaviour care planning tool in a 3-month period were interviewed about their experiences of those meetings. This was interpreted using inductive thematic analysis., Results:  Of 71 individuals identified as meeting this criterion of inclusion 61 were contactable and 27 consented to participation. These participants consisted of 17 health professionals, two parents, two social workers, three advocates, two positive behaviour support advisors within care providers, and one manager of a local care provider. The thematic analysis of participant views of connect behaviour generated five superordinate themes of 'pragmatic', 'enabling', 'validation of effort', 'perceived lack of flexibility' and 'areas for development'. Further inquiry of themes highlighted subthemes of Connect Behaviour being 'sensible', 'practical', 'collaborative', 'holistic' and 'action'. Conversely, some perceived a lack of flexibility in the care planning tool. Future areas for development were also identified in the data. Changes were recommended to increase the tool accessibility for people with intellectual disabilities, support stakeholders understanding of the tool, and consider utility for other clinical scenarios., Conclusions: The evaluation established general feedback to continue to use the Connect Behaviour as a care planning tool. The benefits of Connect Behaviour in comparison to other care planning frameworks needs to be understood., Competing Interests: Conflict of interestThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: RS has received institutional research, travel support and/or honorarium for talks and expert advisory boards from LivaNova, UCB, Eisai, Veriton Pharma, Bial, Angelini, UnEEG and Jazz/GW pharma outside the submitted work. He holds or has held competitive grants from various national grant bodies including Innovate, Economic and Social Research Council (ESRC), Engineering and Physical Sciences Research Council (ESPRC), National Institute of Health Research (NIHR), NHS Small Business Research Initiative (SBRI) and other funding bodies including charities all outside this work. No other author has any conflict of interest.

Background: Minimizing restrictive measures is an important lever to promote self-determination for people with intellectual disabilities. Aims: This study assesses the efficacy of the Multidisciplinary Expertise Team (MDET) program in reducing such measures within Dutch sheltered care homes for people with intellectual disabilities. Methods and Procedures: A clustered randomized trial encompassed 30 residential units, reporting 428 measures on 107 residents through an organization-wide registration system. Units were randomly assigned to the MDET program or care-as-usual. Outcomes and Results: Units assigned to the MDET-program reported a significant stronger reduction in restrictive measures compared to the care-as-usual units (40% versus 20%). Conclusions and Implications: The MDET program shows promise in decreasing restrictive measures by enhancing awareness and sharing expertise across disciplines at staff and resident levels., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: The review aimed to investigate the effectiveness of parent-child relationship interventions for families of children with intellectual disability up to 12 years old., Methods: Quasi-experimental or randomised controlled trials (RCTs) of interventions targeting the parent-child relationship where ≥50% of children had an intellectual disability were included. Meta-analyses of parent-child relationship outcomes and child outcomes used standardised mean difference as the effect size., Results: Twenty-seven papers were included (N = 1325). Parent-child relationship outcomes improved significantly (n = 1325; g = 1.08, 95% CI: 0.64, 1.52) with a large effect size that was robust to sensitivity analyses. Child developmental outcomes improved significantly (n = 1082; g = 0.65, 95% CI: 0.23, 1.07), and indicated a large effect size for child socialisation and communication., Conclusions: Findings suggest that interventions targeting parent-child relationship quality are associated with substantial improvements in parent-child relationship and may improve child outcomes related to socialisation and communication., (© 2024 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: People with intellectual/developmental disabilities (IDD) are known to have high rates of prescription drug use, particularly for psychotropic medications. This is of concern due to the many side effects associated with these medications and because of the risks of polypharmacy. In this paper we compare the most commonly dispensed drugs and all psychotropic medications for youth with IDD compared with youth without IDD., Methods: Using population-level administrative health data over a 10-year period, this study examined medications dispensed to youth with an IDD aged 15-24 years compared with youth without an IDD. The most common medications dispensed and the number of youth they were dispensed to were determined. As well a wide variety of psychotropic medications were examined., Results: There were a total of 20 591 youth with IDD and 1 293 791 youth without IDD identified. Youth with IDD had higher odds of being dispensed pain medications, amoxicillin, salbutamol, levothyroxine and all the psychotropic medications (antidepressants, antipsychotics, anxiolytics, anti-adrenergic agents, mood stabilisers and stimulants). For youth with IDD, 6558 (31.85%) were dispensed two or more different psychotropic medications within a year, compared with 75 963 (5.87%) of youth without IDD., Discussion: Compared to youth without IDD, youth with IDD had significantly higher odds of being dispensed most of the prescription medications studied, including all of the psychotropic medications. They were also twice as likely to be dispensed two or more medications from different classes of psychotropic drugs within the same year. These findings have important implications for the health of people with IDD and for their health care providers., (© 2024 John Wiley & Sons and MENCAP.)

Background: Prescribing of psychotropic drugs (PDs) and applying restrictive measures are both frequently used in managing challenging behaviour of people with intellectual disabilities (ID), which is not always according to guidelines or good clinical practice., Aims: This study aimed to investigate the potential triangular relationship between challenging behaviour, the application of restrictive measures and PD prescription., Methods and Procedures: In this cross-sectional study, data on challenging behaviour, PD prescription and restrictive measures were collected. We defined and compared four mutually exclusive groups of participants., Outcomes and Results: Challenging behaviour in the group in whom one or more PD were prescribed as a restrictive measures (PDRM) was more severe than in the other three groups. More severe challenging behaviour, a higher number of antipsychotics, antidepressants and anxiolytics/hypnotics prescriptions, a lower dosage, and more application of domotics as restrictive measure was shown in the PDRM compared to the group in whom PDs were prescribed according to guidelines (PDNRM)., Conclusions and Implications: We did not find indications for a triangular relationship of challenging behaviour, the application of restrictive measures and PD prescriptions. Future longitudinal research is needed to better understand this complex relationship and should investigate the indication and the effect of treatment. WHAT THIS PAPER ADDS?: This study is a first exploration of the potential triangular relationship between symptoms of challenging behaviour, psychotropic drug (PD) prescription, and the application of restrictive measures. Prescribing PDs and applying restrictive measures are two interventions which are commonly used to manage challenging behaviour in people with intellectual disabilities. Both have been subject of research separately in recent years. However, it is conceivable that the PD prescription in treatments for challenging behaviour could be a substitute for another form of a restrictive measure, for example a physical or mechanical restraint. For this purpose, we defined and compared four mutually exclusive groups of participants. We found no indication for this triangular relationship. On the other hand, we found the highest severity of challenging behaviour in the group who used PDs as restrictive measure next to other restrictive measures. Our results may suggest that both prescribing PDs and applying non-pharmacological restrictive measures are used simultaneously in managing challenging behaviour, are not sufficiently implemented or effective., (Copyright © 2024 Elsevier Ltd. All rights reserved.)

Introduction: Individuals who have a dual diagnosis of both a psychiatric disorder and an intellectual disability (ID) are more likely to exhibit challenging behaviour than the general population. Clinicians globally have been encouraged to use positive approaches such as Positive Behaviour Support (PBS) when managing challenging behaviour., Aim: To explore nurses' views, opinions and perceptions on the use of positive behaviour support, as an adjunctive therapy, in the management of challenging behaviour in adults with a dual diagnosis of a mental health disorder and an intellectual disability within a mental health setting., Method: A descriptive qualitative study was undertaken to identify registered nurses' experiences of using PBS in managing challenging behaviour. Data were collected from ten participants via semi-structured interviews and analysed using thematic analysis., Results: Two themes were constructed; 1) Being involved from the beginning and 2) Impact on adults with a dual diagnosis., Discussion: Nurses' involvement from the onset was fundamental in maximising the potential of PBS. Benefits of PBS were identified. Having a meaningful relationship with clients and a good knowledge of their behaviours was integral to the success of PBS., Implications for Practice: Participants emphasised the importance of continuous education around PBS. Nurses should be included in the formulation of PBS plans. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: RELEVANCE STATEMENT., Competing Interests: Declaration of competing interest The authors have no conflicts of interest to declare., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Introduction: Challenging behaviour (CB) is a common issue among children with autism spectrum disorder or intellectual and developmental disability. Mental health applications are low-threshold cost-effective tools to address the lack of resources for caregivers. This pre-post study evaluated the feasibility and preliminary effectiveness of the smartphone app ProVIA-Kids using algorithm-based behaviour analysis to identify causes of CB and provide individualized practical guidance to manage and prevent CB., Methods: A total of 18 caregivers ( M  = 38.9 ± 5.0) of children with a diagnosis of autism spectrum disorder (44%), intellectual and developmental disabilities (33%) or both (22%) aged 4-11 years ( M  = 7.6 ± 1.8) were included. Assessments were performed before and after an 8-week intervention period. The primary outcome was the change in parental stress. Caregiver stress experience due to CB was also rated daily via ecological momentary assessments within the app. Secondary outcomes included the intensity of the child's CB, dysfunctional parenting, feelings of parental competency as well as caregivers' mood (rated daily in the app) and feedback on the app collected via the Mobile Application Rating Scale., Results: We observed increases in parental stress in terms of conscious feelings of incompetence. However, we also saw improvements in parental stress experience due to CB and overreactive parenting, and descriptive improvements in CB intensity and caregiver mood., Discussion: ProVIA-Kids pioneers behaviour analysis in a digital and automated format, with participants reporting high acceptance. Pilot results highlight the potential of the ProVIA-Kids app to positively influence child behaviour and caregiver mental health over a longer intervention period., Registration: The study was registered at https://www.drks.de (ID = DRKS00029039) on May 31, 2022., Competing Interests: RP is a partner in Lenox UG, which has set itself the goal of translating scientific findings into digital health applications. Lenox UG holds shares in Health Study Club GmbH. RP received consulting fees, reimbursements for congress attendance and travel expenses as well as payments for lectures in the context of diabetes topics and in connection with mobile health and e–mental health topics. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. The author(s) declared that they were an editorial board member of Frontiers, at the time of submission. This had no impact on the peer review process and the final decision., (© 2024 Meerson, Buchholz, Kammerer, Göster, Schobel, Ratz, Pryss, Taurines, Romanos, Gamer and Geissler.)

Purpose: Positive behaviour support (PBS) is recommended as a service response to challenging behaviours. In Australia, however, there has been concern regarding PBS policy and implementation. In response, this article proposes a tiered PBS service model for disability and community settings, which is evidence-based and rights-driven., Materials and Methods: Relevant literature, policy guidelines, and clinical experience are used to inform a positive behaviour support service model for community implementation., Results: The Positive Behaviour Support in Disability and Community Service (PBS-DCS) model articulates systems-wide practices that support effective PBS provision within a human rights approach. The model describes three tiers of behaviour support: Tier I (Foundational), Tier II (Targeted), and Tier III (Specialist), and considers who should deliver which intervention elements and when., Conclusions: The PBS-DCS model provides a framework to support quality PBS practice in community settings. It is proposed that a proof-of-concept model of community-based PBS should be investigated-and that this would help to ensure current practice aligns with the professional expectations of PBS and deliver high quality services to people living with disability.

Background: SYNGAP1- related intellectual disability (SYNGAP1-ID) is a rare genetic disorder presenting with intellectual disability (ID), epilepsy, maladaptive behaviours and communication challenges. To date, few studies have assessed the context in which these maladaptive behaviours occur. This study aims to investigate the prevalence of problem behaviours, characterise the behavioural phenotype and use well-validated measures to explore variables that maintain the behaviours., Methods: Our sample includes 19 individuals diagnosed with SYNGAP1-ID and their parents. Parents provided information on behaviours that their children engage in, as well as their general behavioural dispositions. Well-validated measures (e.g., the Repetitive Behaviour Scale-Revised, Sensory Profile-2 and Vineland Adaptive Behaviour Scale) were used. A subset of individuals underwent further direct experimental assessment of their problem behaviour to identify the variables maintaining those problem behaviours. Parental reports were analysed using nonparametric statistical analysis; the direct assessments of individuals' problem behaviour were analysed using visual analysis and validated supplemental measures., Results: All 19 individuals engaged in some form of maladaptive problem behaviour. Ratings of ritualistic, sameness and restricted behaviours measured by the RBS-R were commensurate with individuals diagnosed with idiopathic autism spectrum disorder (ASD) while self-injurious behaviours were endorsed at a higher level in SYNGAP1-ID when compared with idiopathic ASD. The problem behaviours in our cohort of patients with SYNGAP1-ID were maintained by automatic reinforcement and social attention and are positively correlated with atypical sensory responses., Conclusions: Individuals with SYNGAP1-ID engage in problem behaviours commensurate with other populations (e.g., those with ASD), they exhibit atypical response to sensory stimuli. Problem behaviours were frequently maintained by automatic reinforcement, which may result from a dysregulated sensory system. Children with SYNGAP1-ID may benefit from strategies used in persons with ASD., (© 2024 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Purpose: This study explored experiences of the management of challenging behaviours after traumatic brain injury (TBI) in the acute hospital setting from the perspectives of family members., Materials and Methods: A qualitative, interpretive phenomenological approach was adopted involving semi-structured interviews with 10 family members. Interviews were transcribed and analysed using thematic analysis, with Ecological Systems Theory applied as a guiding framework to discuss findings and implications for practice., Results: Four primary themes were identified: 1) The hospital environment; 2) Hospital staffing; 3) Identifying and preventing triggers, and 4) Family support and information., Conclusions: This qualitative study highlights the need for further information, education, and support to families of patients with TBI in the acute setting. Further research investigating the implementation of best practice approaches for managing challenging behaviours practice in acute settings is needed to overcome the barriers of the hospital environment, inexperienced and inconsistent staffing, and difficulties identifying triggers within the acute hospital setting, experienced by families. Approaches for family involvement in behaviour management strategies, and facilitation of communication for people with TBI in the acute setting requires exploration.

Background: Building 'key skills' may help prevent the development of challenging behaviour in children with an intellectual disability. The aim of this paper was to extend the current limited evidence in this area., Method: We undertook two studies with children with an intellectual disability in school settings: (1) a cross-sectional replication study exploring the relationship between 'key skills' and challenging behaviour. (2) a longitudinal study follow-up exploring change in 'key skill' levels and challenging behaviour., Results: The replication study recruited 74 participants, those scoring lowest in 'key skill' had a 94% chance of having challenging behaviour; those with the highest scores had a 6% chance. The follow-up study recruited 39 participants, we found a significant increase in children's 'key skill' level (p < .001) and a decrease in their challenging behaviour (p = .046)., Conclusion: Building 'key skills' in children with an intellectual disability may help reduce or prevent challenging behaviour., (© 2024 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: Valid and reliable instruments for measuring emotional development are critical for a proper diagnostic assignment in individuals with intellectual disabilities. This exploratory study examined the psychometric properties of the items on the Scale of Emotional Development-Short (SED-S)., Method: The sample included 612 adults with intellectual disabilities (M age  = 37.35, SD age  = 13.27; 59.8% males). Item validity analysis comprising sensitivity and specificity rates and discriminatory power were determined., Results: The relative mean frequency of 'yes' answers to all 200 items was 29.5%. The mean sensitivity rate was 67.5% and the mean specificity rate was 79.3%. Most items (85.0%) showed good discriminatory power with the adjacent stage(s), especially between SED-1, SED-2, SED-3 and SED-4. Particularly in SED-4 some items showed weaknesses in the differentiation between these stages., Discussion: This study adds to previous validation studies by showing that most SED-S items have psychometrically sound properties., (© 2024 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: Stepping Stones Triple P (SSTP) is a complex parent-mediated intervention aimed to reduce behaviours that challenge in children with moderate to severe intellectual disabilities, aged 30-59 months., Methods: To formulate a comprehensive understanding of SSTP implementation in the UK, we conducted a process evaluation collecting stakeholder views and considering intervention fidelity, dose, reach, delivery adaptations, and acceptability., Results: Fidelity and quality of delivery ratings were high. Parents perceived SSTP as valuable, reporting increased parental confidence and understanding of the child's behaviours. However, only 30% of families received an adequate dose of the intervention. Parents who only received treatment as usual described feeling abandoned by current services. Service managers emphasised the importance of availability of resources and therapist training for successful intervention delivery., Conclusions: SSTP supports effective management of early-onset behaviours that challenge. Further work is needed to ensure equitable access to the intervention across health and social care services., Trial Registration: NCT03086876 - https://www., Clinicaltrials: gov/ct2/show/NCT03086876?term=Hassiotis+Angela&draw=1&rank=1., (© 2024 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Aggression and violence are common day to day problems in psychiatric settings. However, the optimal means of assessing that risk remains unclear. In the context of that uncertainty many tools have evolved, among which the HCR-20 is one of the most globally accepted, though many questions remain about its performance, how and when it should be deployed and how it can be most effectively used. In this 12 month follow up study of 210 forensic psychiatric inpatients with a diagnosis of a schizophrenia spectrum disorder we explored these issues. We found that the performance of the HCR-20v3, especially its Total score, performed well up to 6 months after it was rated but its performance deteriorated after that. Repeating the HCR-20v3 at 6 months stabilised the risk assessment and led to improved performance in the second months over and above the first rating. The HCR-20v3 was good at identifying those subjects at low risk of violence over 6 months of follow up in a forensic inpatient setting. The real-world implications of this study are that the HCR-20v3 is an effective means of identifying patient at low risk of violence, but it should be reassessed every 6 months., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

Background: Compared with the general population, adults with an intellectual developmental disorder (IDD) are more likely to develop mental health problems and to receive high levels of psychotropic medication, particularly antipsychotics. The emotional development (ED) approach may help to better understand the nature of challenging behaviour (CB) and tailor treatment and support accordingly. The aim of this retrospective study was to investigate the impact of the ED approach on the prescription of psychotropic medication during inpatient psychiatric treatment., Methods: The clinical data of 1758 patients were analysed within a retrospective study design over a period of 12 years. ED level was assessed (1) for the first time (INITIAL-SEO), (2) during a previous hospital stay (PAST-SEO) or (3) not at all (NO-SEO). The effects of the ED assessment and the respective intervention during the current admission on the number of psychotropics and the number and dosage of antipsychotics were analysed for the total sample, including those with CB, autism spectrum disorders and psychosis. Group differences were analysed by a chi-square test and a one-factorial analysis of variance. For analysing the impact of the application of the ED approach on psychotropic medication, a covariance model was applied. Changes between the subsamples were analysed by t-tests for dependent samples., Results: The ED approach had a significant impact on reducing the overall amount of psychotropic medication and the dosage of antipsychotics in all patients with IDD. These effects were mainly attributable to those showing CB. In patients with autism spectrum disorders, the developmental approach reduced the number of antipsychotics. No effects could be observed in patients with psychosis; in this subsample, both the number and dosage of antipsychotics increased., Conclusions: The application of the ED approach in the current hospital stay reduced the number of psychotropic drugs and the number and dosage of antipsychotics, especially in those patients with IDD and CB, but also in those with autism spectrum disorders., (© 2024 The Authors. Journal of Intellectual Disability Research published by John Wiley & Sons and MENCAP.)

Purpose: People with intellectual disabilities often show challenging behaviour, which can manifest itself in self-harm or aggression towards others. Real-time monitoring of stress in clients with challenging behaviour can help caregivers to promptly deploy interventions to prevent escalations, ultimately to improve the quality of life of client and caregiver. This study aimed to assess the impact of real-time stress monitoring with HUME, and the subsequent interventions deployed by the care team, on stress levels and quality of life., Materials and Methods: Real-time stress monitoring was used in 41 clients with intellectual disabilities in a long-term care setting over a period of six months. Stress levels were determined at the start and during the deployment of the stress monitoring system. The quality of life of the client and caregiver was measured with the Outcome Rating Scale at the start and at three months of use., Results: The results showed that the HUME-based interventions resulted in a stress reduction. The perceived quality of life was higher after three months for both the clients and caregivers. Furthermore, interventions to provide proximity were found to be most effective in reducing stress and increasing the client's quality of life., Conclusions: The study demonstrates that real-time stress monitoring with the HUME and the following interventions were effective. There was less stress in clients with an intellectual disability and an increase in the perceived quality of life. Future larger and randomized controlled studies are needed to confirm these findings.

Background: This study assessed the effectiveness of a cross-departmental case review panel-the Multicap Complex Behaviour Forum (CBF)-in reducing challenging behaviour exhibited by people with intellectual disabilities., Methods: Thirty participants (15 CBF participants and 15 matched-control participants) took part in the study. Behavioural data was collected for each CBF participant (and their matched control) for the three-month period before entering the CBF, during their time in the CBF, and the 3 months after exiting the CBF., Results: There was a significant interaction of group and time observed, with the CBF participants showing more change in behavioural incidents across time. Associated with this change was a noticeable reduction in staff injury costs related to the challenging behaviour of the CBF participants., Conclusions: This study demonstrates that positive behavioural and organisational outcomes are enhanced by fostering collaboration across multiple organisational systems when it comes to supporting people who exhibit challenging behaviours., (© 2024 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: This study focuses on what feeling safe means for people with mild intellectual disabilities and severe challenging behaviour, and which factors affect their sense of safety. Method: Thematic analysis was used to analyse data collected during (1) ethnographic longitudinal research and (2) interviews and focus groups among professionals and service users. Results: Feelings of safety can relate to three main themes: (1) a physical environment that reduces risks and temptations; (2) a reliable, predictable, and supportive environment; and (3) an accepting environment that enables service users to establish a normal life. An analysis of which factors affect service users' sense of safety identified 20 themes (e.g. team climate) and 34 subthemes (e.g. interactions with other service users). Conclusions: A range of interconnected factors can affect service users' feelings of safety. Future research should explore what organisations and external actors (e.g. the police) can do to promote those feelings., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: This study investigated the extent to which behaviour support services are accessible under Australia's National Disability Insurance Scheme (NDIS)., Method: We conducted semi-structured interviews with families who support a member with an intellectual disability and challenging behaviour. We analysed this data with a supply and demand access framework initially designed for health care and described the lived experiences of participants and their families accessing behaviour supports. Results show that while the NDIS has improved participants' ability to pay for behaviour (and other) supports, this financial capacity represents only one of six other important aspects of access., Results: Families compensate for the shortcomings of the marketised environment which has arisen under the NDIS., Conclusion: This raises questions about the responsibilities of support provision, which is obscured in the new NDIS system and places responsibility for successfully accessing behaviour supports onto the family of the person with an intellectual disability.

Background: Introducing new working methods is common in healthcare organisations. However, implementation of a new method is often suboptimal. This reduces the effectiveness of the innovation and has several other negative effects, for example on staff turnover. The aim of the current study was to implement the ABC method in residential departments for brain injured patients and to assess the quality of the implementation process. The ABC method is a simplified form of behavioural modification based on the concept that behaviour operates on the environment and is maintained by its consequences., Methods: Four residential departments for brain injured patients introduced the ABC method sequentially as healthcare innovation using a stepped-wedge design. A systematic process evaluation of the implementation was carried out using the framework of Saunders et al. Descriptive statistics were used to analyse the quantitative data; open questions were clustered., Results: The training of the ABC method was well executed and the nursing staff was enthusiastic and sufficiently involved. Important aspects for successful implementation had been addressed (like a detailed implementation plan and implementation meetings). However, facilitators and barriers that were noted were not addressed in a timely manner. This negatively influenced the extent to which the ABC method could be properly learned, implemented, and applied in the short and long term., Conclusions: The most challenging part of the introduction of this new trained and introduced method in health care was clearly the implementation. To have a successful implementation serious attention is needed to tailor-made evidence-based implementation strategies based on facilitators and barriers that are identified during the implementation process. Bottlenecks in working with the ABC method have to be addressed as soon as possible. This likely requires 'champions' who are trained for the job, next to an organisation's management that facilitates the multidisciplinary teams and provides clarity about policy and agreements regarding the training and implementation of the new method. The current process evaluation and the recommendations may serve as an example for the implementation of new methods in other healthcare organisations., (© 2024. The Author(s).)

Angelman Syndrome (AS) is a rare genetic disorder that impacts 1:20,000 people. Challenging behaviour, such as severe injurious behaviour, aggression and frequent unprovoked episodes of laughter are a significant problem among adults with AS that adversely impacts an individual's quality of life. This study, for the first time, aims understand the characteristic of challenging behaviour, its frequency, and the factors associated with it in adults with AS. Data from participants with AS (N = 37; aged 18-46 years) registered with the Global Angelman Registry, were divided into challenging behaviour and non-challenging behaviour groups based on the presence or absence of 50% of the behaviours recorded in the registry. Descriptive statistics, chi-squared and t-test analysis were conducted to assess the impact of variables on challenging behaviour. Multiple regressions were conducted to investigate the predictors of challenging behaviour. 56% of the sample presented with challenging behaviour. Disorders of arousal, self-injury, behaviour dysregulation, repetitive behaviour, and the lack of physical therapy accounted for 59% of the variance of challenging behaviour in this population. It was found that challenging behaviour was very common in this population. A significant association was found between challenging behaviour and both sleep arousal and the lack of physical therapy. Sleep arousal and the lack of physical therapy were the key factors associated with challenging behaviour in this study. Targeted interventions are needed to decrease challenging behaviour and future research should focus on sleep interventions and increased opportunities for physical therapy., (© 2024. The Author(s).)

Adults with Intellectual Disability who show severe challenging behaviour need intensive individual support. If intensive support proves to be insufficient, extra intensive support can be provided in the Netherlands, which is characterized by more time for individual care. The present study evaluates the impact of extra intensive support over time. Client characteristics of adults receiving intensive support (IS, N =70) or extra intensive support (IS+, N =35) are compared and the impact of provided support on challenging behaviour (Developmental Behaviour Checklist-Adults), adaptive behaviour (Vineland II), and Quality of Life (San Martin Scale) is evaluated over a three years period. Compared to adults receiving intensive support, those receiving extra intensive support initially showed higher intensity of challenging behaviour, higher number of mental health diagnoses and stronger focus on goals to reduce challenging behaviour. Over time, intensity of challenging behaviour decreased in adults receiving extra intensive support, although Quality of Life and adaptive functioning did not improve. Results show that the indications for receiving extra intensive support are clear and that the extra support is effective over time. It is concluded that extra individual support is serving those who need this support., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Studies have found that presence of challenging behaviours and mental health problems limits employment for people with intellectual disabilities. This study investigates the associations between age, gender, living condition, level of intellectual disability, diagnoses, behaviour, mental health, and employment in adults with intellectual disabilities in Norway., Method: A cross-sectional community-based survey including 214 adult participants (56% men) with intellectual disabilities., Results: In our sample, 25% had no organised day activity, 27% attended non-work day care, 19% attended sheltered employment, or day care with production, without pay and 29% worked in paid sheltered employment. One participant attended mainstream employment. Moderate and severe/profound level of intellectual disability, possible organic condition and irritability significantly reduced the odds of employment (paid and unpaid)., Conclusion: Findings suggest unequal access to the sheltered employment that was meant to be inclusive. More individualised evaluation of prerequisites is suggested to further facilitate employment for this group., (© 2024 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Lay Abstract: Many autistic individuals with intellectual disability experience anxiety, and for those who use few or no words, anxiety may present as behaviour that challenges, such as self-injury and avoiding anxiety-provoking situations. Families report difficulty accessing support from services for autistic individuals experiencing anxiety. Moreover, once receiving support, effective interventions for autistic people with intellectual disability are limited. We completed individual and group discussions with 16 caregivers of autistic people with intellectual disability, to (a) explore their experiences of accessing services for anxiety and/or behaviour that challenges for their child; and (b) understand what matters to caregivers when developing interventions that have been designed for them and the autistic individual with intellectual disability that they support. Caregivers reported that services, in their experience, did not deliver the support that they expected, and that they often needed to 'fight' for support. Caregivers considered services and families working together, the inclusion of peer support, and families being offered interventions that are flexible to individual circumstances to be important. These considerations are valuable for clinicians and researchers developing interventions and aiming to improve outcomes for autistic people with intellectual disability and their families., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Objectives: Autistic children frequently exhibit irritability, which can manifest as aggression, self-injurious behaviour, and severe tantrums, leading to significant impairments. Two atypical antipsychotics have been licensed by the Food and Drug Administration for the treatment of irritability in autistic children, although a significant percentage of these children do not respond to this treatment. This study aimed to determine the frequency of drug refractory irritability (DRI) and identify the risk factors in a large clinical sample of autistic children., Methods: The medical records of 1279 children aged 2-18 years diagnosed with autism and undergoing clinical follow-up were retrospectively analysed. Socioeconomic and clinical characteristics, co-occurring psychiatric disorders and physical conditions were recorded., Results: 55% of the sample used antipsychotics to treat irritability, and 8.2% met the DRI criteria. Older age, severe support requirement for autism, language impairment, anxiety disorders, sleep difficulties, gastrointestinal system, and dental problems were found to significantly increase the risk of DRI., Conclusion: Our findings indicate that a significant proportion of the clinical sample of autistic children had DRI. The physical, psychiatric, and environmental risk factors identified in our study also highlight heterogeneity in the etiology of DRI. Further research on DRI is needed to develop treatment and prevention strategies., Competing Interests: No potential conflict of interest was reported by the authors., (© 2024 The British Society of Developmental Disabilities.)

Background: Arabs with intellectual disabilities and/or autism may exhibit challenging behaviour that affects them and their caregivers. Early, appropriate intervention may reduce these effects. This review synthesised and critically appraised challenging behaviour intervention research for this population., Methods: All published empirical research on challenging behaviour interventions for Arabs with intellectual disabilities and/or autism was included. In September 2022, 15 English and Arabic databases yielded 5282 search records. Studies were appraised using the MMAT. Review findings were narratively synthesised., Results: The 79 included studies (n = 1243 participants) varied in design, intervention, and evaluation method. Only 12.6% of interventions were well-designed and reported. Arab interventions primarily targeted children, were applied collectively on small samples, lacked individualised assessment, and were based on an inconsistent understanding of challenging behaviour., Conclusion: The evidence base on interventions for Arabs with intellectual disabilities and/or autism and challenging behaviour needs strengthening. Attention should be given to culturally relevant adaptations., (© 2024 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: Young children with an intellectual disability have a higher risk of developing challenging behaviour (CB). Early identification of risk factors for CB allows for earlier intervention. The aim of the current study was to assess the prevalence and correlates of CB in preschool-aged children with an intellectual disability in Riyadh (Saudi Arabia)., Methods: One hundred twenty parents of preschool-aged (3-6 years old) children who had been diagnosed (DSM-5 criteria) with an intellectual disability completed an online cross-sectional survey that included demographic, CB and child adaptive skills measures. The relationship between CB and 15 potential correlates (e.g. gender and degree of disability) was examined using independent samples t-tests and chi-squared tests., Results: Most preschool-aged (3-6 years old) children with an intellectual disability exhibited CB (78.8%, 95% CI [70.3, 85.8]), with a 63.2% prevalence rate for self-injurious behaviours (95% C [53.8, 72.0]), a 57.6% rate for aggressive destructive behaviours (95% CI [48.2, 66.7]) and a 25% rate for stereotypy (95% CI [17.7, 34.0]). The likelihood of a child engaging in self-injurious and stereotyped behaviours was higher in those with autism and intellectual disability. Children with Down syndrome displayed fewer stereotyped behaviours. Low adaptive skill levels were associated with increased overall CB, self-injurious and stereotyped behaviours., Conclusions: The identified correlates of CB in this population and cultural context align with the international evidence base. Findings have implications for the importance of early systematic screening of CB in preschool-aged children in Saudi Arabia and other similar contexts. Preventative measures are suggested for preschool-aged children with an intellectual disability who are more likely to demonstrate CB, such as those with autism and poor adaptive behaviours., (© 2023 The Authors. Journal of Intellectual Disability Research published by John Wiley & Sons and MENCAP.)

Background: Although many parents with intellectual disability (ID) demonstrate good parenting practices, some parents experience difficulties in managing challenging behaviours. One potential solution to this issue involves using The Family Game, a program designed to teach parents with ID how to manage challenging behaviours in their child., Aims: The purpose of our study was to conduct an independent replication of an investigation that had been performed by the developer of the program., Materials & Methods: We used a multiple baseline design to examine the effects of The Family Game on the behaviour of two parents with ID who had a 3-year-old child., Results: Similarly to the original study, our results indicate that The Family Game improved the use of effective parenting strategies during role play, but that these gains failed to generalise to real-life settings., Conclusion: The study further supports the necessity of adding novel strategies to the game to better promote generalisation., (© 2024 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

This study aims to contribute to the knowledge about lacking or contradictory effects of benzodiazepine on hyperaroused or aggressive behaviour in persons with intellectual disability (ID). We conducted a retrospective and natural case study in a person with mild ID and multiple adverse childhood experiences (ACE), using routine diary data consisting of 275 days including 113 consecutive days under benzodiazepine medication. The medication effects were documented as "calm / relaxed", "fretful / distressed" and "sleep / doze". Transitions between these were modelled using Markov chains. Differences in transitions were analysed using Chi-Square test for homogeneity. The results show a significantly reduced stability of mood and increased distressed behaviour under benzodiazepine. This is in line with reports about the effects of psychotropic medication in patients with ID and challenging behaviour. Besides other influences on unexpected medication effects, a possible dissociative identity disorder is discussed as an additional explanation., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Purpose: Clinical practice guideline (CPG) recommendations for the management of challenging behaviours after traumatic brain injury (TBI) in hospital and inpatient rehabilitation settings are sparse. This systematic review aims to identify and appraise CPGs, and report high-quality recommendations for challenging behaviours after TBI in hospital and rehabilitation settings., Materials and Methods: A three-step search strategy was conducted to identify CPGs that met inclusion criteria. Two reviewers independently scored the AGREE II domains. Guideline quality was assessed based on CPGs adequately addressing four out of the six AGREE II domains. Data extraction was performed with a compilation of high-quality CPG recommendations., Results: Seven CPGs out of 408 identified records met the inclusion criteria. Two CPGs were deemed high-quality. High-quality CPG recommendations with the strongest supporting evidence include behaviour management plans; beta-blockers for the treatment of aggression; selective serotonin reuptake inhibitors for moderate agitation; adamantanes for impaired arousal/attention in agitation; specialised, multi-disciplinary TBI behaviour management services., Conclusions: This systematic review identified and appraised the quality of CPGs relating to the management of challenging behaviours after TBI in acute hospital and rehabilitation settings. Further research to rigorously evaluate TBI behaviour management programs, investigation of evidence-practice gaps, and implementation strategies for adopting CPG recommendations into practice is needed.Implications for rehabilitationTwo clinical practice guidelines appraised as high-quality outline recommendations for the management of challenging behaviours after traumatic brain injury in hospital and inpatient rehabilitation settings.High-quality guideline recommendations with the strongest supporting evidence for non-pharmacological treatment include behaviour management plans considering precipitating factors, antecedents, and reinforcing events.High-quality guideline recommendations with the strongest supporting evidence for pharmacological management include beta blockers for aggression in traumatic brain injury.Few guidelines provide comprehensive detail on the implementation of recommendations into clinical care which may limit adoption.

Background: Stepping Stones Triple P is an adapted intervention for parents of young children with developmental disabilities who display behaviours that challenge, aiming at teaching positive parenting techniques and promoting a positive parent-child relationship., Objective: To evaluate the clinical and cost-effectiveness of level 4 Stepping Stones Triple P in reducing behaviours that challenge in children with moderate to severe intellectual disabilities., Design, Setting, Participants: A parallel two-arm pragmatic multisite single-blind randomised controlled trial recruited a total of 261 dyads (parent and child). The children were aged 30-59 months and had moderate to severe intellectual disabilities. Participants were randomised, using a 3 : 2 allocation ratio, into the intervention arm (Stepping Stones Triple P; n  = 155) or treatment as usual arm ( n  = 106). Participants were recruited from four study sites in Blackpool, North and South London and Newcastle., Intervention: Level 4 Stepping Stones Triple P consists of six group sessions and three individual phone or face-to-face contacts over 9 weeks. These were changed to remote sessions after 16 March 2020 due to the coronavirus disease 2019 pandemic., Main Outcome Measure: The primary outcome measure was the parent-reported Child Behaviour Checklist, which assesses the severity of behaviours that challenge., Results: We found a small non-significant difference in the mean Child Behaviour Checklist scores (-4.23, 95% CI -9.98 to 1.52, p  = 0.146) in the intervention arm compared to treatment as usual at 12 months. Per protocol and complier average causal effect sensitivity analyses, which took into consideration the number of sessions attended, showed the Child Behaviour Checklist mean score difference at 12 months was lower in the intervention arm by -10.77 (95% CI -19.12 to -2.42, p  = 0.014) and -11.53 (95% CI -26.97 to 3.91, p  = 0.143), respectively. The Child Behaviour Checklist mean score difference between participants who were recruited before and after the coronavirus disease 2019 pandemic was estimated as -7.12 (95% CI -13.44 to -0.81) and 7.61 (95% CI -5.43 to 20.64), respectively ( p  = 0.046), suggesting that any effect pre-pandemic may have reversed during the pandemic. There were no differences in all secondary measures. Stepping Stones Triple P is probably value for money to deliver (-£1057.88; 95% CI -£3218.6 to -£46.67), but decisions to roll this out as an alternative to existing parenting interventions or treatment as usual may be dependent on policymaker willingness to invest in early interventions to reduce behaviours that challenge. Parents reported the intervention boosted their confidence and skills, and the group format enabled them to learn from others and benefit from peer support. There were 20 serious adverse events reported during the study, but none were associated with the intervention., Limitations: There were low attendance rates in the Stepping Stones Triple P arm, as well as the coronavirus disease 2019-related challenges with recruitment and delivery of the intervention., Conclusions: Level 4 Stepping Stones Triple P did not reduce early onset behaviours that challenge in very young children with moderate to severe intellectual disabilities. However, there was an effect on child behaviours for those who received a sufficient dose of the intervention. There is a high probability of Stepping Stones Triple P being at least cost neutral and therefore worth considering as an early therapeutic option given the long-term consequences of behaviours that challenge on people and their social networks., Future Work: Further research should investigate the implementation of parenting groups for behaviours that challenge in this population, as well as the optimal mode of delivery to maximise engagement and subsequent outcomes., Study Registration: This study is registered as NCT03086876 (https://www.clinicaltrials.gov/ct2/show/NCT03086876?term=Hassiotis±Angela&draw=1&rank=1)., Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: HTA 15/162/02) and is published in full in Health Technology Assessment ; Vol. 28, No. 6. See the NIHR Funding and Awards website for further award information.

Success of psychosocial interventions in reducing aggressive challenging behaviour is likely to be related not only to mechanistic aspects but also to therapeutic and system factors. The study aims to examine the facilitators and barriers that influence whether psychosocial interventions for aggressive challenging behaviour in adults with intellectual disabilities lead to positive change. We conducted 42 semi-structured interviews with adults with intellectual disabilities who display aggressive challenging behaviour, family/paid carers, and professionals engaged in or delivering a psychosocial intervention across the UK. Data were analysed thematically using a framework approach. Stakeholders considered therapeutic and supportive relationships and personalised care as facilitating factors in addressing aggressive challenging behaviour. The operational structure of community intellectual disability services and conflicting expectations of professionals and carers were the main contextual barriers that impeded the implementation of psychosocial interventions in adults with intellectual disabilities. Findings highlight the valued components that maximise positive change in adults with intellectual disabilities who display aggressive challenging behaviour. Several operational adjustments including referral criteria, roles of professionals and workforce issues need to be addressed in services to maximise the implementation of psychosocial interventions leading to reduction in aggressive challenging behaviour in this population., Competing Interests: No competing interests were disclosed., (Copyright: © 2023 Kouroupa A et al.)

Aims and Method: NHS England recommends the commissioning of intensive support teams (ISTs) to provide effective support to people with intellectual disability (ID) when in crisis. However, there is a paucity of evidence regarding how these services should be organised. This exploratory secondary analysis of data from the IST-ID study aimed to investigate IST characteristics that relate to clinical outcomes. The primary outcome was mean change in the total score on the Aberrant Behavior Checklist and its subscales., Results: A measure of mental illness severity was the only variable associated with our primary outcome of reduction in challenging behaviour. Accommodation type, affective status and gender were associated with the subdomains of irritability, hyperactivity and lethargy in unadjusted and adjusted analyses., Clinical Implications: Our findings indicate that variation in clinical outcomes is influenced by individual rather than organisational factors. Further research on the theoretical fidelity of the IST-ID model is needed.

Background: One in five children with an intellectual disability in the UK display behaviours that challenge. Despite associated impacts on the children themselves, their families, and services, little research has been published about how best to design, organise, and deliver health and care services to these children. The purpose of this study was to describe how services are structured and organised ("service models") in England for community-based health and care services for children with intellectual disability who display behaviours that challenge., Methods: Survey data about services were collected from 161 eligible community-based services in England. Staff from 60 of these services were also interviewed. A combination of latent class and descriptive analysis, coupled with consultation with family carers and professionals was used to identify and describe groupings of similar services (i.e., "service models")., Results: The latent class analysis, completed as a first step in the process, supported a distinction between specialist services and non-specialist services for children who display behaviours that challenge. Planned descriptive analyses incorporating additional study variables were undertaken to further refine the service models. Five service models were identified: Child and Adolescent Mental Health Services (CAMHS) (n = 69 services), Intellectual Disability CAMHS (n = 28 services), Children and Young People Disability services (n = 25 services), Specialist services for children who display behaviours that challenge (n = 27 services), and broader age range services for children and/or adolescents and adults (n= 12 services)., Conclusions: Our analysis led to a typology of five service models for community health and care services for children with intellectual disabilities and behaviours that challenge in England. Identification of a typology of service models is a first step in building evidence about the best provision of services for children with intellectual disabilities who display behaviours that challenge. The methods used in the current study may be useful in research developing service typologies in other specialist fields of health and care., Study Registration: Trial Registration: Current Controlled Trials ISRCTN88920546, Date assigned 05/07/2022., (© 2023. The Author(s).)

Background: Around 2% of the population have intellectual disabilities. Over one-third people with intellectual disabilities (PwID) present with 'challenging behaviour', which nosologically and diagnostically is an abstract concept. Challenging behaviour is influenced by a range of bio-psycho-social factors in a population, which is unable to suitably comprehend and/or communicate concerns. This predisposes to poor health and social outcomes. There is no evidence-based treatments for managing challenging behaviour. Cannabidiol (CBD) and tetrahydrocannabinol (THC) are being trialled for a range of disorders, which are over-represented in PwID and provoke challenging behaviours, such as severe epilepsy, spasticity, post-traumatic stress disorder, social phobia, pain, etc., Methods: This perspective review explores the different conditions, which benefit from medicinal CBD/THC preparations, by analysing recent literature from neurobiological, pre-clinical and clinical studies related to the topic. The evidence is synthesised to build an argument of the therapeutic benefits and challenges of medicinal cannabis to manage severe challenging behaviour in PwID., Results: There is developing evidence of medicinal CBD/THC improving psychiatric and behavioural presentations in general. In particular, there is emergent proof in certain key areas of influence of medicinal CBD/THC positively supporting challenging behaviour, for example in children with neurodevelopmental disorders. However, there are significant challenges in employing such treatments in vulnerable populations such as PwID., Conclusion: Further clinical research for the considered use of medicinal CBD/THC for challenging behaviour management in PwID is needed. Strong co-production with experts with lived experience is needed for further testing to be done in this exciting new area., Competing Interests: Declaration of conflicting interestsThe authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: LK works privately half a day a week for Sapphire Clinics https://www.sapphireclinics.com/ which is a medicinal cannabis prescribing private clinic. She also runs a cannabinoid peer group in her Trust. She has contributed to the Volteface-led report for the All-Party Parliamentary Group exploring the need for appropriate and indication-specific prescribing of cannabis medications in the UK. RS has received institutional and research support from LivaNova, UCB, Eisai, Veriton Pharma, Bial, Angelini, UnEEG and Jazz/GW pharma outside the submitted work. No other author has any notable disclosures.

Background: Challenging behaviours after traumatic brain injury (TBI) in the acute setting are associated with risk of harm to the patient and staff, delays in commencing rehabilitation and increased length of hospital stay. Few guidelines exist to inform practice in acute settings, and specialist services providing multi-disciplinary expertise for TBI behaviour management are predominantly based in subacute inpatient services. This study aims to investigate acute and subacute staff perspectives of barriers and enablers to effectively managing challenging behaviours after TBI in acute hospital settings., Methods: Qualitative focus groups were conducted with 28 staff (17 from acute setting, 11 from subacute setting) across two sites who had experience working with patients with TBI. Data were analysed using inductive-deductive reflexive thematic analysis. Data were applied to the constructs of the integrated-Promoting Action on Research Implementation in Health Services (i-PARIHS) framework to generate themes representing barriers and enablers to managing challenging behaviours after TBI in the acute hospital setting., Results: Four barriers and three enablers were identified. Barriers include (1) Difficulties with clinical decision making; (2) Concerns for risks to staff and patients; (3) Hospital environment; (4) Intensive resources are required. Enablers were (1) Experienced staff with practical skills; (2) Incorporating person-centred care; and (3) Supportive teams., Conclusion: These findings can inform pre-implementation planning for future improvements to TBI behaviour management in acute hospital settings. Difficulties with clinical decision making, concerns for risks of injury, the hospital environment and lack of resources are major challenges. Implementation strategies developed to address barriers will need to be trialled, with multi-disciplinary team approaches, and tailored to the acute setting., (© 2023. The Author(s).)

Aim: A pilot cluster randomized controlled trial was performed to evaluate the effects of a music group intervention and a leisure activities group intervention on well-being, self-esteem, social acceptance, challenging behaviour and three components of executive functions (inhibitory control, cognitive flexibility and visual working memory) of adults with intellectual disabilities (ID)., Method: Twenty-nine participants living in four residential facilities for people with ID were randomized into a music or a leisure activities group intervention. Sixteen weekly sessions of one hour were performed with six to eight participants per group. Measurements were carried out at baseline, post-intervention and 11 weeks follow- up. Results were analysed with linear mixed models., Results: The leisure activities group intervention improved more than the music group intervention on internalizing behaviour overall and on inhibitory control at post-intervention. However, further analyses showed that this improvement was only significant in one of the two leisure activities facilities., Conclusion: A leisure activities group intervention seems a promising intervention to improve internalizing behaviour and inhibitory control of younger adults with mild ID. Implications for the delivery of leisure activities group interventions and especially music group interventions are discussed., What This Paper Adds: Involvement in leisure activities of people with ID is associated with better well-being, an improvement in social skills and a reduction in emotional and behavioural problems. Active music making, as a specific form of leisure activities, seems to improve well-being, social acceptance and challenging behaviour (CB) as well. Moreover, in different (non-clinical) groups a significant effect of active music making has been found on self-esteem and executive functioning (EF). So far, little attention has been paid to the possible positive effects of active music making on adults with ID. In the current paper, a randomized controlled trial (RCT) was conducted to compare the post-intervention and follow-up measurements with baseline measurements between a music group intervention and a leisure activities group intervention on well-being, self-esteem, social acceptance, CB and EF in adults with ID. Multilevel models were used to detect possible intervention effects of 16 weekly sessions. Overall, inhibitory control and internalizing behaviour improved more amongst the participants of the leisure activities group than amongst the participants of the music group. This was mainly the case for younger participants who had mild ID. These effects are discussed and recommendations regarding the improvement of a music intervention for people with ID are presented., (Copyright © 2023 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Background: Different instruments were devised for assessing emotional development (ED) level in persons with an intellectual disability (ID), that is, the Scale of Emotional Development - Short (SED-S), the Scheme for Appraisal of Emotional Development (SAED), the Scale for Emotional Development - Second Revision (SED-R 2 ) and the Schaal voor Emotionele Ontwikkeling - Lukas (SEO-Lukas). The aim of this study was to compare the level of emotional functioning as assessed with the SED-S with the SAED, SED-R 2 and SEO-Lukas., Methods: Emotional development was measured in adults with ID with the SED-S (N = 186) and the SAED (n = 85), the SED-R 2 (n = 50) and the SEO-Lukas (n = 51). Correlation analysis and Cohen's kappas were calculated between the SED-S and the three respective scales. Internal consistencies (Cronbach's alpha) of the four scales were determined., Results: The SED-S results correlated most with the SEO-Lukas (γ = 1; кω = 0.936) followed by the SAED (γ = 0.809; кω = 0.343) and least by the SED-R 2 (γ = 0.665; кω = 0.182). The stage of ED assessed with the SED-S was lower than the ED results measured with the SAED, but higher than with the SED-R 2 and most similar to the SEO-Lukas. Cronbach's alphas were high, ranging from 0.853 to 0.975., Conclusions: Given the respective differences between the scales, the SED-S may equalise the results as compared with previous versions., (© 2023 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Background: Adults with intellectual disabilities often display behaviour that challenges that is a result of biological differences, psychological challenges, and lack of appropriate social support. Intensive Support Teams (IST) are recommended to support the care needs of this group and avoid hospitalisation. However, little attention has been paid to the perspectives of stakeholders who manage, work in, or use ISTs., Method: Interviews and focus groups were conducted with 50 stakeholders (IST service managers and professionals, adults with intellectual disabilities, and family and paid carers) of ISTs. Services operated according to one of two service models previously identified in ISTs in England (enhanced or independent)., Results: Thematic analysis identified accessible and flexible support, individualised care, and the involvement of carers and other relevant agencies in management plans and reviews as features of good IST care highlighted by all stakeholder groups. IST managers and professionals described the key challenges of current IST provision as unclear referral criteria, limited interfaces with other local services, and perceived threats associated with funding and staff retention. Findings were similar between the two IST models., Conclusions: ISTs are able to offer care and specialist support that is valued by families, service users and other care providers. However, they face several operational challenges that should be addressed if ISTs are to reach their potential along with community intellectual disability services in supporting adults with intellectual disabilities who display behaviour that challenges in the community., (© 2023 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: The autistic population is growing and ageing and this also applies to the parents. Despite this, research about parental experiences is still relatively scarce. Even though studies show, compared with adults with other disabilities, parents of autistic adolescents and adults report a decrease in well-being and that caregiving is often a lifelong commitment., Method: This scoping review maps, synthesises and identifies gaps in previous research as regards the experiences of parental caregivers of adult autistic children. The review was based on Arksey and Malley's framework and six databases were searched., Results: The results show how the research has focused on the well-being and consequences of daily caregiving for an American middle-class mother who co-resides with an adult son., Conclusion: To enhance knowledge about formal services and service needs, more research is necessary on different welfare regimes and social contexts., (© 2023 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Objectives: Restrictive interventions (seclusion, restraint and special observations) are used on psychiatric wards when there are no other means available to keep a patient or others safe. These measures can be traumatic, and the Mental Health Commission and the Health Service Executive are focused on minimising their use. We set out to determine whether, following a COVID related reduction in bed numbers on a high dependency psychiatric ward in St John of God Hospital in Dublin, there was a change in their incidence., Methods: Data on restrictive interventions and challenging behaviours were gathered for 9-month periods before and after March 2020 when COVID related ward changes took place. Figures were also collected on seclusion and restraint for the previous 18 months for a longer-term view. Ward and hospital occupancy levels were also recorded., Results: Between the two time periods, episodes of seclusion fell by 53% and episodes of restraint by 56%. The hours devoted to special observation declined by 30% and incidents of challenging behaviours fell by 26%. Ward occupancy levels fell by only 5%. The longer-term comparison of figures for seclusion and restraint point towards a downward trend from mid-2019 that was accentuated in the post-COVID period., Conclusions: The changes found may relate to reduced crowding on the ward or other COVID related factors such as the emphasis on social distancing and a shared sense of purpose on the ward. The longer-term trend points towards an emerging cultural shift. The challenge now is to sustain and build upon these changes.

Background: This study explored the perceptions of staff for people with mild intellectual disabilities or borderline intellectual functioning and severe challenging behaviour in relation to the support they received at work from four groups of professionals (i.e. team leaders, managers, psychologists and other staff members). The team climate, such as the workplace having clearly defined goals for staff, was also explored. In addition, the associations between the support from each of the professionals and team climate with the well-being and job satisfaction of staff were examined. We hypothesised that staff would perceive higher levels of support from professionals around a team (i.e. team leaders, managers and psychologists) and a more positive team climate when professionals around a team experience more positive mutual collaboration., Methods: An online questionnaire about support at work, team climate, well-being and job satisfaction was completed by 201 staff members from 32 teams at 10 residential service organisations. In addition, professionals surrounding these teams rated their mutual collaboration., Results: Both support received at work from all four groups of professionals and team climate showed significant small to moderate positive associations with job satisfaction. Well-being was associated with support from team leaders, psychologists and other staff members in the team, as well as with team climate. We did not find support for the hypotheses that staff would perceive higher levels of support or a more positive team climate when professionals around a team experience more positive mutual collaboration., Conclusions: This study highlights the importance of investing in staff support and creating a positive team climate for promoting staff well-being and job satisfaction. Implications for future research regarding staff support, team climate and the collaboration between professionals around a team are discussed., (© 2023 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Service providers may experience difficulties in providing appropriate care to optimize the functioning of individuals with intellectual disability and challenging behaviour. External consultation to identify and address the unmet support needs underlying the behaviour may be beneficial. Applying the multidimensional American Association Intellectual and Developmental Disabilities (AAIDD) model may facilitate this approach. We aimed to describe the content and outcomes of consultation for individuals with intellectual disability and challenging behaviour referred to the Dutch Centre for Consultation and Expertise in relation to the AAIDD model. Interventions were based on the clients' diagnostic, treatment, and support needs and were categorized according to the five dimensions of the AAIDD model. Outcomes of the consultations were assessed based on reports in the file and rated as 'clear improvement', 'improvement' or 'no improvement or deterioration'. In two-thirds of the 104 studied files, consultees were satisfied with the improvement in functioning. Interventions targeted the difficulties of the service providers in supporting their clients and were most often applied within the Health and Context dimensions of the AAIDD model. We may conclude that consultation of an expert team may be valuable to support the care providers, and the use of the AAIDD model may be helpful to address the unmet needs to improve the functioning of individuals with challenging behaviour.

Background: There is evidence that psychotropic medications are overprescribed and overused to manage behaviours of concern for people with intellectual disabilities. Disability support workers and support staff lack education and training on the administration and safety of psychotropic medication use. This study aimed to test the applicability and preliminary efficacy of SPECTROM, an education programme developed in the UK, in an Australian context., Methods: The training comprises two parts: Module 1 encompasses psychotropic medications, their use and side effects. Module 2 focuses on non-pharmacological interventions for supporting people with behaviours of concern. Thirty-three participants attended the training course and completed pre-training and post-training surveys on the Psychotropic Knowledge Questionnaire and Management of Aggression and Violence Attitude Scale-Revised at four time points: pre-training, 2 weeks, 3 months and 5 months post-training., Results: Psychotropic Knowledge Questionnaire scores showed statistically significant post-training improvement at all post-training time points (P < 0.05). Management of Aggression and Violence Attitude Scale-Revised scores were high at pre-training and did not change significantly at any of the post-training survey time points. A 2-week post-training feedback questionnaire reported 80% agreement that the training programme was appropriate, useful and valid. Only 36% of participants completed questionnaires at all time points., Conclusions: SPECTROM training increased staff knowledge of psychotropic medications, yet loss of participants was high. Further refinement of the applicability of the training for the Australian context and evaluation of the feasibility of implementation, clinical and cost-effectiveness of the programme are required., (© 2023 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Autism Spectrum Disorder (ASD) is associated with complex distress and challenging behaviours that have a negative impact on the everyday life of those with ASD, as well as their parents and carers. These challenging behaviours include negative emotional behaviours, motor behaviours, and changes in routines. Even though challenging behaviours occur in most subjects with ASD, the cause of these largely remains unknown. It has been implicated that these challenging behaviours are associated with a change in the health of those with ASD. More research needs to be conducted that can establish a direct association. Towards this goal, the present study aimed to explore whether health status had an impact on the distressing behaviour in the subjects diagnosed with ASD. We analysed the response from the parents/carers in a Macedonian population of those with ASD, to determine which challenging behaviours were most likely to be observed during a change in health. Based on a scoring system, the manifestation of challenging behaviour was evaluated and compared with the changes in health. Changes in appetite or dietary preferences, irritability and low mood, and loss of previously acquired skills had the greatest association with a change in health. These findings provide early insight into types of challenging behaviours that are directly associated with a change in health. Our results demonstrate a relationship between health status and challenging behaviour in the subject with autism, suggesting that caregivers may need to consider this when choosing strategies for managing challenging behaviour.